Friday, December 30, 2016

Thinking of Canada

Chaya was rushed to hospital by ambulance this week
[Illustrative image from Shaarei Zedek's website]
We have been weathering an overwhelmingly difficult period with our youngest child, Chaya.

Then, just to stir things up a bit, my heart decided to "break" on me: I was hospitalized with Broken Heart Syndrome, a.k.a. Takotsubo Syndrome a.k.a. Stress Cardiomyopathy.

But after I’d returned home, thank G-d on the mend, Chaya decided to spice things up again with uncontrolled seizures rendering her unable to swallow either food or water. My husband rushed with her by ambulance to the ER. Throughout the 24 hours that Chaya spent in the aisles of the ER, my husband sat glued to a chair beside her.

After receiving IV fluids, she was launched on two new meds which we hope will improve her seizure and liver problems – Keppra and Prednisone. Perhaps they’ll also enable her to retrieve those minimal skills she’d acquired over many years – feeding herself and walking with assistance – which have entirely evaporated in the past week.

Our quest for some help at home is dragging on so we are still caring for Chaya ourselves while I try to sandwich in a bit of  recovery from my unexpected coronary event. “The system” (i.e. Ministry of Welfare and National Insturance) washes its hands of parents who opt to keep their children at home despite disability and illness (as I described in "Aleh 101" a year ago). “How dare you reject institutions like Aleh!” is basically the message.

Thus it was with particular disappointment that I encountered yet another PR plug for Aleh's chain of institutions. Dated December 23, 2016, it appeared in the local daily, Yisrael Hayom, a known mouthpiece for Prime Minister Netanyahu. Purportedly penned by a Canadian pediatrician, Dr. Lynn Hierlihy, it spouted the customary Aleh hype. But because it was a medical professional this time advocating the institutionalization of our most needy children, I was especially incensed.

Her blog post [here] first sang the praises of volunteering:
Volunteers are critical partners in the growth and development of society... And while these individuals are no doubt selfless, they will often admit to a single "selfish" motive: Volunteering makes them feel incredible. Numerous scientific studies have proved that volunteering reduces stress and improves physical and mental health.
She elaborated on the topic and I have no gripes about that. True, I have rarely found volunteers very helpful in caring for Chaya and much prefer professional input for people with profound disabilities. But, fair enough, she made an innocent point.

Afterwards, though, she segued to a florid profile of Aleh. I would have expected a pediatrician to appreciate the crucial role that a family and its love play in a child’s healthy development. And I mean all children – including those with disabilities. But apparently this one doesn’t.  To hear one instead extolling the virtues of closed institutions is baffling.

Here is her paean to Aleh:
Needless to say, our visit to ALEH Negev-Nahalat Eran was magical. Never before had I seen a rehabilitation or long-term care facility that so clearly exemplified how "the world is built on loving kindness." I fell in love with the children and their dedicated caretakers, and I embarked on a mission to raise awareness about ALEH upon my return home. I now do everything in my power to connect our community in Canada to the ALEH family. When my son celebrated his bar mitzvah, he requested that guests make donations to ALEH in lieu of gifts. Our synagogue has established an ongoing relationship with the organization, which I coordinate, to ensure that we continually give back to our newfound Israeli family in any way we can. And I take every opportunity to visit ALEH and lend a hand.
Dr. Hierlihy’s blog post is particularly confusing coming as it does from an Ontarian. Canada deinstitutionalized its care for people with disabilities several years ago. In the Spring 2009 (Vol. 28, No. 1) edition of  the Canadian Journal of Community Mental Health [here], we read that:
Ontario has recently closed its last 3 institutions for persons with developmental disabilities. Very little research has been conducted on Canadian deinstitutionalization projects, and the impacts and bona fides of such endeavours have not been well documented in Canada. However, the closing of institutions has occurred in most Western jurisdictions and has been the subject of much research in Australia, the United Kingdom, and the United States. Although community services are of variable quality, this literature review suggests that the Ontario plan to close institutional facilities in favour of community-based residential services will be of general benefit to former institutional residents.
That CJCMH article concluded that
Very simply, the institution cannot replace the community in providing individuals—including those with developmental and serious psychiatric disabilities—with the opportunities for the good life. There are no compelling client-related arguments left for keeping people with cognitive limitations, and possibly people with psychiatric disabilities, away from their families and communities.
Don’t Israelis with disabilities deserve the same compassion, the same dignity, the same loving care within their family and community as do Canadians, Dr. Hierlihy?

Saturday, December 24, 2016

Not a Dickensian tale

The Neve Ha'irus institution [Image Source]
This is reality for some people with disabilities in Israel of 2016.

Bizchut, the Israel Human Rights Center for People with Disabilities, has released the following summary of an unannounced visit last Thursday by the director of its Community Outreach Department, Naama Lerner, together with Knesset Member Ilan Gilon, to a closed institution for people with cognitive disabilities, Neve Ha'irus, in Nes Ziona. 

They were responding to a series of serious complaints from parents of residents and from past employees at Neve Ha'irus that Bizchut had received about that institution.

There they say they encountered many disturbing sights that included extreme physical and emotional neglect. Some of the shocking findings they reported:
  • Residents locked into their dormitories without any activities.
  • Bedrooms bare of personal cupboards or personal clothing. Some beds have boxes underneath them containing all of the resident’s personal possessions.
  • Some of the beds lacked any bedding or winter blankets.
  • In some of the dormitories,  the kitchen and bedrooms are locked, barring residents from entering their own rooms when they seek a bit of privacy.
  • The handles of bedroom doors have been removed to prevent the residents from entering their rooms. Each staff member carries a handle in his pocket which he inserts into the door when he needs to open it.
  • Signs of rampant neglect including spider webs.
  • The absence of any books, games or computers. Residents roam around to and fro with doing nothing to do. A very difficult sight to behold: people are erased, robbed of their identity.
The homepage of the Neve Ha'irus website says the institution, established in 1957, has been under the full supervision of the Ministry of Welfare since 1985.

The original Hebrew text of the Bizchut announcement (posted here) goes on to say:

It was recently reported to Bizchut that, three weeks before, the dead body of a resident had been removed from the premises. When we arrived there to investigate, we happened to find an intensive-care ambulance standing at the institution’s entrance, preparing to rush to hospital another resident in a state of hypothermia.

This facility, intended to serve as home to 130 people, must not be tolerated. It is not located in some isolated spot but rather in the very center of the country, in Nes Ziona. The conditions there should not be permitted to exist in today’s State of Israel.

We demand that the Ministry of Welfare:
  1. Immediately close Neve Ha’irus and transfer its residents to appropriate settings within the community.
  2. Appoint an outside, independent body (an ombudsman) that will review the complaints lodged so as to ensure that the voices of the residents of closed institutions are heard and that abuses such as these are eliminated.
  3. Investigate the deaths that have occurred in the past year at Neve Ha’irus and ascertain the reasons behind the hospitalizations of residents.
If you would like to join our effort, please contact Naama Lerner at Bizchut at naamalerner@bizchut.org.il or by phone 052-856-6219. Please leave a message and we will get back to you.

Wednesday, December 21, 2016

Back to hospital, this time as a patient

My body found a way to halt that downward spiral I was in.

Overwhelmed by my impending surgery (for severe POPS) along with my daughter Chaya's new medical crisis, I sensed impending implosion - the emotional variety.

My conversations were peppered with "I can't go on", "I'm going to have a breakdown", "I need help" rolling off my lips all day long. But certainly nothing that would land me in hospital.

Yet Friday night I developed weird symptoms - extreme weakness, nausea, vomiting and low blood pressure - and reluctantly took an ambulance to the emergency room, accompanied by one of my daughters.

When blood test results arrived and the doctor declared "You've had a cardiac event", I was  blown away and frightened. A diagnosis more like virus/dehydration was what I'd expected. "When could I possibly have had one?" I asked him incredulously.

After an angiogram which, thank G-d, didn't find any blocked  arteries, the cardiologists settled on the likelihood of Takotsubo Syndrome.

If you ever feel the urge to for a cardiac event, this is definitely the one to choose. But, sorry guys, it's overwhelmingly a post-menopausal women's condition.

For those of you female caregivers desperate for relief, relief, here's some more info about this relatively newly-categorized syndrome, only recognized in Japan since 1990 and in the West since 1998).

And for you over-stressed men, we'll see what my husband comes up with. He's been single-handedly caring for both Chaya and home as well as visiting me.

In the meantime, Chaya, treated with CBD alone, is still keeping her seizure rate low - but don't forget to keep that strictly under wraps. (Can't be too wary of that seizure-jinx!)

My husband also succeeded in eliciting a great sodium and potassium reading from Chaya in her latest blood test results so her dehydration is behind us. And while she's definitely not out of the gaunt range yet, the thin bulging vein on her jaw is now invisible. That leaves us with her liver and hematological issues to contend with. Our next appointment with the liver specialist on Sunday

I'm looking forward to having  her stand/walk and put the spoon independently in her mouth  again -   activities that have been deleted from her routine during my absence.

Takotsuba is apparently can recur - so we must somehow alter our home situation to prevent that. Consequently we've been desperately trying to contact the government where the social worker handling our daughter's case purportedly works. The hospital social worker told us that woman is the only key to any sort of government care assistance for Chaya's home care.

Were we to drive down to our local Aleh branch and deposit our daughter at the door, there is little doubt we would be treated to what their website calls "a break from the 24/7 attention require to care for them appropriately".

But because we are determined to keep our Chaya at home with us, we are rewarded by our so called "welfare state" with persistent and studious disregard.

Tuesday, December 13, 2016

Can Aleh get its prisoners story straight?

The caption on the original reads: "The prisoners shed their uniforms
before arriving at ALEH to volunteer." [Image Source]
Aleh Negev's so-called Prisoner Rehabilitation Program really should be dismantled. Yesterday. It is just one of several problematic activities at Aleh that our government is generously subsidizing i.e. with your taxes and mine.

For instance, Aleh's PR professionals circulated two conflicting descriptions of the prisoners' recognizability on the grounds of Aleh Negev. 26 of them are released there three times a week in civilian clothes in order to mingle with the most vulnerable of all Israelis.

How does that pan out? It depends on which Aleh PR release you choose to believe. For instance, one piece claims those prisoners merge seamlessly with everyone else there:
"Dressed in regular clothing, the inmates look like the village rehabilitation workers or regular volunteers at the village and the residents cannot differentiate." [Source: Huffington Post]
Needlessly to say, this is a dangerous situation. Prison garb is designed to protect the public by rendering prisoners easily detectable. Here is Wikipedia on the topic:
"A prison uniform serves the purpose to make prisoners instantly identifiable, to limit risks through concealed objects and to prevent injuries through undesignated clothing objects. It can also spoil attempts of escape as prison uniforms typically use a design and color scheme that is easily noticed and identified even at a greater distance." 
But then there is another Aleh PR release that asserts the precise opposite:
"Though the inmates don’t stick out for their attire, they are distinctive among most of ALEH-Negev’s other 180 volunteers because they are male. “Most of our volunteers are female, as is our staff,” says Sekely. This is a wonderful way to rehabilitate prisoners,” says ALEH-Negev CEO Masada Sekely." [Israel 21C]
But before you buy that line, factor in the following, again, disseminated by Aleh's PR team:
Simon Weststeijn is the first member of ALEH’s administrative staff to arrive every morning and one of the last to leave every evening.  As the point person for all international volunteers for ALEH, Israel’s foremost network of state-of-the-art [etc] ...The most remarkable thing about this savvy and passionate volunteer coordinator is that he, too, is a volunteer... [Source]
There is a photograph on the Aleh website [see it here] showing a group of "special and dedicated volunteers" who pose with Simon. I'm no mathematician but I count five out of twelve male volunteers here.

I have a hunch that somebody at Aleh is reading my blog because in January 2016 - after I had blogged about its risks - the prisoner program was re-dubbed the White Collar Criminal Rehabilitation Program.

I suppose the concept of inviting prisoners, some serving long sentences, in order to develop close, long term relationships with our most helpless citizens, didn't sit well with a few donors..

That's not to say that the Aleh PR machine doesn't make a valiant effort to present these prisoners as exemplary citizens. Here is one description they disseminate, quoting Orna Ben-Tal "who helps direct the program in the South":
“It is clear that we can’t just accept anyone to this volunteer program, particularly because we are dealing with a population that is vulnerable and weak. There are no violent offenders for example, nor murders, pedophiles or rapists, and those who are drug and alcohol addicts are not accepted into the program.” [Huffington Post]
I suppose those prisoners at Aleh who have been incarcerated for eight years snatched a neighbor's apple pie from her window sill. I mean which other crimes are left?

If you have been wondering what the point of all this is for the residents of this institution, well, Aleh sheds light on that - and inadvertently shoots itself in the foot in the process.
“We don’t want our disabled residents to be in their rooms all day, staring up at the ceiling. We want them outside, breathing the fresh air around the beautiful flowers here, interacting with people.” [Stav Herling-Gosher, quoted here. She "runs the public and international relations for Aleh Negev".] 
Whoa! Can you repeat that, please, Stav?  If it weren't for these bussed-in prisoners, Aleh residents would be sitting around all day "staring up at the ceiling"?

And that's with an annual gift of $24 million of government funds and millions more in donations to the Aleh chain!? That's with an expenditure, according to Aleh promotions, of $4,300 per month per child!

Pray tell, where is all that cash going?

As a first step toward de-insitutionalization in Israel, this program must become history. Remember, by the admission of the Israel Prison Service [here] no other country in the world has chosen to imitate it in the five years since it won an award.

Friday, December 9, 2016

Still in the tunnel, looking for the light

Still grappling with Chaya's liver disease - as yet undiagnosed definitively - and from the persistent pressure sores.

We had a harrowing Saturday night involving an hour and a half of consecutive seizures which had us with phone in hand to call an ambulance. But thank G-d we were able to avoid hospitalization as well as starting that new anti-epileptic, Vimpat. But we do now have a stock of the stuff in our medicine drawer at the ready,

As long as feasible, we'll continue to treat Chaya with CBD oil, three times a day and THC oil whenever the seizures erupt. (Those are the two forms of cannabis oil available.)

Chaya is also getting diuretics to remove the ascites (fluid accumulation) caused by her liver damage, Ridding her of fluid has resulted in an extreme gauntness that shocks us anew every day. Bones and veins that were not meant to be seen by the naked eye are protruding everywhere.

We were also blown away by an email we received a few days ago from the pediatric neurologist who had been treating Chaya for the last five years and who had basically told us to go jump in a lake when we first notified her of Chaya's liver damage 6 weeks ago. This week she wrote a one-line inquiry about Chaya's condition. Neither my husband nor I have yet managed to deal with our disappointment or to figure out what sort of response to write.

And while we struggle through this without any help from "the system", that institutionalization empire, Aleh, churns out its lies in a steady flow of fresh PR releases.

Here's one that caught my eye. I was struck specifically by the repetition of the term "family" to describe Aleh. As if hammering away at that appealing mendacity will make it true.
The Aleh Family - an Unbreakable Bond | ...ALEH is a family, so when a member of the family celebrates an important milestone, it only makes sense that everyone is involved... As the ALEH residents, staff, and volunteers danced with Elisheva and her groom, it was clear that they were a real family.  
We all know what a family is - and no residential institution comes close to fitting the description.

Friday, December 2, 2016

Dealing with a new diagnosis

Here at home, Chaya received a new diagnosis this week from the gastro doctor: Autoimmune Hepatitis. He told us its cause is unknown and it is almost unheard of in patients as young as Chaya.

So while she is no longer on Valproic Acid, it is unlikely that her liver will repair itself to any extent. On the contrary, as the doctor added, progression of the disease is the sole prognosis.

Her assisted walking with me has deteriorated dramatically in the past week and she looks gaunt now that excess fluid is being removed by diuretics.

All in all, Chaya is not in a good place.

More things we ought to know about Aleh

A prisoner and an Aleh "resident" [Image Source: Israel 21C]
I took a break from grappling with Chaya's physical issues to email the International Corrections and Prison Association (a.k.a. the ICPA) this week. They are a nongovernmental organization in Special Consultative Status with the Economic and Social Council of the United Nations.

Why in the world did I do that?

Well, some of you know how riled I am by Aleh's prisoner rehabilitation program [some background] which it touts up the wazoo in both the Israeli and the foreign media.

Aleh's PR whiz team don't let anybody forget that the program won an award. And that is one detail about the program that is 100% accurate. The ICPA did in fact bestow the Offender Management and Reintegration Award on that Aleh program in 2011.

The Aleh program enables 26 felons to leave prison and swap their prison uniforms for civies every Sunday, Monday and Tuesday to interact one-on-one with some of Israeli society's most vulnerable citizens - those with profound disabilities.

This preposterous program plays out at the institution operated by Aleh in the middle of Israel's desert where the prisoners are assigned to male residents of young adult age or older. The felons, some serving seven year terms, are, according to Aleh, harmless. Nevertheless Aleh itself, by its own admission, keeps them away from its female residents, its children and its hydrotherapy. Apparently the male residents - equally at risk - just don't rate!

Given the kudos that Aleh has showered upon itself for this program and for that international award, it would be fair to presume that other institutions around the world are emulating it. So  I checked that out.

The very organization that granted it an award could not name another such program anywhere else in the world when I approached them. Instead it referred the question to the Israel Prisons Service. Here is the response I got from them this week:
Dear Frimet Roth

I received your question from Fraser Brayns [of the ICPA]

As you know, this is a unique project that was initiated at the Israel prison service.

I asked around and We are not familiar with similar projects that are currently being implemented in other countries. [I added the emphasis - FR]

Please don't hesitate to contact me on any further question.

Best wishes

Abigael
And on the financial front where Aleh manages to infuriate those who truly care about people with disabilities, here is this choice tidbit from Haaretz of April 19, 2016:
"Among other things, Budget Key [data analysts of government funding] investigators discovered that Aleh Negev, which runs a rehabilitation center in the Negev, saw its allocations from the government nearly double in 2015. The organization is headed by Avi Wurtzman of the Habayit Hayehudi party, who had been due to become a Knesset member with the resignation of Yinon Magal late last year... 1.2 million shekels ($317,000) in government funding, compared with 693,000 shekels the year before." 
Smelling a bit fishy to you too? You can  read more here.

Monday, November 28, 2016

Netanyahu's disastrous deal (Hint: nothing to do with submarines)

Malki cuddling her youngest and very disabled sister
Today our angel Malki would have been 31 years old.

I actually used to call her "malach'l" (מלאכ'ל) at times because of its similarity to her name and because in Yiddish the word means angel which she was in every sense of the word.

My husband and I only go to Malki's grave twice a year: on her yahrzeit of course, but also on her birthday to mark a day that we always celebrated together as we still do for every family member's birthday. The siblings trek out to our home. We share a meal together including a decadently-creamy cake and candles, and the classic repertoire of  birthday songs and my yanking of the birthday-child's arms high in the air as we all chant "Are you one, are you two....?"

Overshadowing the celebrations these past sixteen years is our grief for Malki and the constant realization anew that our yearning for her will be eternal.

Overlaying that pain for the past five years is our intense pining for justice.  Prime minister Netanyahu snatched that from us when he released 1,027 terrorists in the Shalit Deal.

Malki's self confessed and convicted killer, the mass murderer Ahlam Tamimi who had been entenced to 16 life terms, was among those 1,027. Since 2011, Tamimi has exploited her freedom to incite other Muslims to terrorism. She does this with ease and skill from her home base in Amman, Jordan where she hosts a weekly TV program, as well as via Facebook and Twitter and in speeches she gives at venues throughout the Arab world.

There is no need to delve into submarine deals to reveal the selfish, narcissistic motivations that color Mr. Netanyahu's every move. The now infamous Shalit Deal does an exemplary job of that, causing so much agony to so many of our fellow citizens that it is hard to fathom how the man sleeps at night.

Aside from the many families of the murdered who, like us, endured the travesty of justice the deal unleashed, there are fresh victims who have lost loved ones to terror attacks perpetrated by some of those released Shalit Deal murderers.

I snapped this at Malki's grave yesterday
In June 2015, Malachi Rosenfeld was the sixth Israeli to be killed in attacks carried out or planned by Palestinians released under the deal since April 2014.
One of the alleged cell members, Ahmad Najjar, a Hamas operative who was said to have orchestrated and funded the shooting attack from Jordan, has yet to be apprehended, the security service said. Before being released in the Shalit prisoner exchange, Najjar spent eight years in an Israeli prison for his involvement in previous terror attacks that killed three Israelis... Najjar... is a reminder of the cost Israel has paid for Shalit’s freedom, a scenario that critics of the deal predicted would unfold... ["Palestinians freed in Shalit deal killed 6 Israelis since 2014", Times of Israel, July 20, 2015]
In June 2016, former cabinet secretary Zvi Hauser said:
In an era in which there is the experience of a total lack of trust in the political system, I have no doubt that an event like the release of Gilad Shalit has a kind of effect of reestablishing trust..." [Haaretz]
adding that the deal was
a bucket of cold water of sorts on the fire [of the social justice protests of 2011] [Haaretz]
You'll find more such critiques of the deal by then-cabinet members at that same source. Please keep the outrageous Shalit Deal in your thoughts this week to honor our Malki's memory.

(Note: I intended to post this yesterday on Malki's birthday, November 27. But my daughter Chaya's health issues precluded that - details about that in my next post.)

Saturday, November 19, 2016

Our new reality. Or: Don't do Depalept!

My daughter Chaya undergoing a battery of tests in hospital last week
Chaya endured several days in the hospital last week and, naturally, so did my husband and I (although he magnanimously volunteered to spend the nights there with zero-to-minimal sleep).

We brought her there after an ultrasound ordered by her pediatrician revealed the condition known as ascites. He'd been concerned by blood tests of the past five months which have consistently included several anomalies including low protein levels.

In hospital, she was drained of 4 litres (that's no typo!) of fluid that had accumulated in her abdomen due to a damaged liver. Tests were done to learn what caused that damage. Theories entertained by our pediatrician along with the new gastro and neurologist, now on the case are:
  • The anti-epileptic, valproic acid, known in Israel as Depalept which Chaya has been on for some five years. (And see below for some up-to-minute news about that specific drug.)
  • The genetic syndrome, Wilson's Disease (test results for this were all negative unfortunately)
The pediatric neurologist who first prescribed valproic acid and has been monitoring her since, basically dumped Chaya when we sent him the ultrasound results  Here's the email response we received:
"This is beyond the scope of my expertise. You need to talk to your family physician ASAP"
When we also asked that same neurologist whether he had submitted the request to the Ministry of Health for an increase in Chaya's cannabis allotment/month, as he had promised to do a month ago, he wrote us:
"I would stop the cannabis now. There is a problem with her liver and no one knows if this is the cause."
We haven't heard anything further from that MD. I'm still overcome with disillusionment - we thought he cared about Chaya.

And the unanimous view of the hospital staff is noteworthy:
Don't stop the cannabis. It is not the cause of her liver problems, they said  It's the valproic acid that's the likely culprit and she must be weaned off it asap.
Three days later, after receiving IV fluids and albumin, a visit from the hospital's wound specialist and a second one from the gastro specialist, Chaya was released.

She had suffered brand-new blisters/sores on her hands from the plastic tape the staff  used for the IV even though I warned them that she is intolerant of it. Her hand also swelled to three times its size when the IV malfunctioned. (that took two days to recede). And the gastro, though kind and sensitive about it, gave us a bleak prognosis: Chaya is now a chronic liver patient who will need fluid drainage every week or so.

So, what are the morals to be learned?
  • First: Beware any abnormal blood test results when your child is on Depalept. Always delve further. Chaya had abnormal blood test results for several years but her neurologist reassured us that everything was fine. (Our pediatrician, on the other hand, was persistently concerned but politely yielded to the  prescribing neurologist's opinion.)
  • Second: Try cannabis oil - both CBD and THC - to treat the epilepsy. While Chaya was being drained of the ascites, she began to seize repeatedly, racking up some 15 of them. The ultrasound technician who also inserted the drainage needle pressured me - actually badgered is more accurate - to give Chaya some sort of drug to stop them. Instead, I waited for my husband to bring our THC oil from home. In the past it has halted such attacks and, once again, thank G-d, it worked its magic.
The same neurologist who just dumped us was appalled when we informed him several months ago that we'd easily gotten THC from our government-licensed cannabis supplier and were using it on rare occasions.
"You should have checked first with me. There are no studies results to prove THC to be effective against epilepsy. Only CBD oil." (The reason is that no THC studies have ever been carried out.) 
Our personal experiences with the stuff didn't interest him in the slightest.

And while we grapple with this new reality - a child who is both profoundly disabled and now chronically ill - we learn of yet another new term and concept that  Aleh has concocted to keep government and private donor funding flowing in to its coffers. They've dubbed it the "High Dependency Wing".

It is a puzzling concept. After all, for decades Aleh has been advertising its product as aimed at children with severe disabilities. Naturally, that translates as  "highly dependent". Yet now, suddenly, they announce the planned construction of its first separate wing with that label.

Wasn't the entire enterprise already "High Dependency"?

Here is the way Aleh's PR team touts it:
In Israel today, children and young adults with complex medical conditions requiring advanced nursing care are often hospitalised long term or placed in old-age homes, due to the lack of a better solution within a safe medical environment. These settings offer little or no opportunities for rehabilitation, education, social activity, or the warmth and love of a home. Being confined in this way drastically inhibits the children’s development, and is an agonising and painful option for parents and families.
The solution is to establish high-dependency wards within a rehabilitative environment so that children with complex disabilities and medical conditions can live a more enriching life.
Yikes!  When will our government and society get it: An institution is not a home! A ward is not a home! The services of a paid staff do not constitute "warmth and love".

Now back to the valproic acid update I mentioned above. Minutes before this post "went to press", I was alerted by a MedpageToday email bulletin to a Reuters report [here] dated November 16, 2016 that France has just created a compensation fund for valproic acid victims.
The French parliament voted to create a nationwide compensation fund and amended the 2017 budget bill late on Tuesday to set aside an initial 10 million euros ($10.7 million) for claims relating to Depakine, a brand name for valproate, which is also used to treat bipolar disorder. Parents of those affected say the French state and Sanofi were too slow to warn of the side effects of the drug, which has been used to successfully treat epilepsy since 1967, after the risks to fetuses became clear by the early 1980s... "The 10 million euros are a starting point," Health Minister Marisol Touraine told lawmakers in the lower house of parliament. "In future years, the sums should be much higher." Touraine told parliament later on Wednesday that compensation would ultimately be paid by "those deemed responsible" without giving details. "I regret that Sanofi didn't seek an amicable settlement as a matter of principle. I hope (Sanofi) will change its position," she said... French social affairs inspection agency IGAS estimated earlier this year that between 2006 - when the medicine started carrying a health warning - and 2014 - when prescription rules were further tightened - some 425 to 450 babies suffered congenital birth defects or were still-born due to the drug... ["France sets up fund for Sanofi epilepsy drug victims", Reuters, November 16, 2016]
And that's without factoring in hepatotoxicity (i.e. drug-induced liver injury, acute or chronic ) which is included in the drug's black box warning and which is now making Chaya's life even more of a misery than it already was.

We will undoubtedly be returning to the hospital either tomorrow or Sunday to drain Chaya's fresh accumulation of fluid. Stay tuned for a tally of litres removed this time.

Thursday, October 27, 2016

Aleh's marathon misstep

Israel's mammoth chain of institutions for children and adults with disabilities is constantly publicizing its activities - reprehensible though they are.

Its latest PR announcement reports that several supporters ran in a marathon to raise yet more cash for the flush Aleh coffers.

This is  newsworthy because - as Aleh pointed out - it was the first time that Aleh fundraisers participated towards that end in a foreign marathon.

But it is even more notable because the country which hosted the marathon in its capital, Germany, has been on the road toward de-institutionalization for over a decade.

In other words, Aleh's running fundraisers promoted a system of warehousing people with disabilities in a country that is busy abandoning that very system.

I'd say it's akin to demonstrating in the streets of Israel in support of honor killings in Pakistan, or of female genital mutilation in Somalia or of capital punishment in the United States - all practices illegal or avoided in Israel.

Already in 2007, a scholarly article, "Deinstitutionalization in Intellectual Disabilities" stated that
"In Belgium, The Netherlands, Germany, Spain and Greece the process of deinstitutionalization has recently begun but institutional care is still dominant."
That article reviewed studies of people who had been transferred from institutions to small community settings:
"People (250 were included in the study) were living in a variety of settings, from residential care to independent living. There was no relationship between cost and outcomes although people had a better quality of life in the community than they had had in the institutions." 
A smaller study was reviewed. It involved 30 matched pairs of people with moderate and severe intellectual disability and challenging behaviour. It produced equally encouraging results:
"Consistent with earlier research on deinstutionalization... they increased in adaptive behaviour, choice making and general quality of life."
To all you marathoners out there: How about running to improve the quality of life of our people with disabilities - instead of the finances of our largest chain of institutions.

Sunday, October 23, 2016

Happiness... and really hard decisions

The Feast of the Rejoicing of the Law at the Synagogue
in Livorno, Italy by Solomon Hart, 1850 (Jewish Museum) [Image Source]
As we stand on the cusp of the happiest holiday in the Jewish calendar, I thought it appropriate to share the Dvar Torah that I relate annually at our family table.

The joy of every other holiday in the Jewish calendar is tempered, each for its own distinctive reason.
  • On the New Year, joy is not even mentioned in the Torah at all because of the angst we all experience over our impending judgments. 
  • On Passover, aside from the first day, we don't even recite the Hallel in its entirety (as we do on Sukkot) because the rejoicing over our liberation from slavery is marred by the deaths of the Egyptians and G-d has warned us not to rejoice over the fall of our enemies. 
  • On Shavuot, the Torah only mentions joy once because we are so concerned over the upcoming harvest which would traditionally determine our upcoming economic situation.
But on Sukkot, which follows just a few days after Yom Kippur, when we believe we have been forgiven and adjudged mercifully, we are urged three times to rejoice. Nevertheless, even on this happiest of all holidays, the word "אך" precedes one of the mentions of joy (in Hebrew: שמח).

The word "אך" is an adverb that limits or minimizes. So, the question is: why, even on this happiest holiday, isn't our joy limitless?

The answer given by the Yalkut Shimoni is that, as parents, we are incessantly wracked with worry over our children's welfare. It's just an inescapable aspect of life. Only in the world to come, when we believe that man will be immortal, will this consuming concern vanish.

To this observation I say: "so true".

But I would add that a parent who has buried a child fears for the welfare of his other children even more intensely than others.

Now parents have myriad ways of expressing that constant concern. One parent's assistance can be another's abuse. A treatment for children with severe disabilities demonstrates this divergence in parental attitudes: the attenuated growth treatment (AGT) commonly known as the Ashley Treatment after its most famous recipient.

I wrote about this twice a few years ago when it was a headliner. In the first post, I was supportive. In the second, downright condemnatory. Which, of course, proves not only how decision-challenged I can be but also what complex issues AGT involves.

Ashley [Image Source]
This week I stumbled across a NY Times article on the Ashley Treatment that appeared back in March 2016.

Both sides of the divide - parents who have administered the treatment and those who abhor it - share many core traits. They are all loving, devoted and self-sacrificing toward their children with severe disabilities. They are also committed to caring for their children at home, despite the challenges posed by their profound disabilities.

The distinction between the two camps is a fine but significant one: which measures are acceptable to enable you to keep your child at home? Are there actions which are beyond a red line?

If you're unfamiliar with the Ashley treatment - and disability activists argue that it isn't one at all because no illness is being treated - here is what doctors did to that girl, whose last name has never been released by her family. They administered the estrogen estradiol which effectively reduced her future predicted height by approximately 13 inches. Additionally, she underwent a hysterectomy to preclude the discomfort of painful menses as well as the uterine bleeding that high doses of estrogen can cause, and the removal of her breast nodules to prevent the growth of breasts.

For the treatment to be most effective a careful monitoring of calories was also required. The desired end result is, of course, a shorter, lighter child.

These same measures have been taken by many other parents who congregate at the website and private message board Pillowangel.org, maintained by Ashley’s parents who have never made their names public, identifying themselves only as “Ashley’s Mom” and “Ashley’s Dad,” or AM and AD. (Their site’s name comes from the endearment given to Ashley and other children like her who spend most of their hours propped up by pillows in bed.)

But then last summer, the Pediatric Endocrine Society published a survey of its members in the Archives of Diseases in Childhood indicating that at least 65 children have received the therapy. (The survey did not break down participants by sex or note whether they had hysterectomies or breast-bud removal.)

And by many doctors’ accounts, the demand for it is increasing even as doctors prefer not to talk about the practice publicly. “You might wonder if we’re getting underreporting,” says David Allen, a co-author of the survey and head of the endocrinology and diabetes department at University of Wisconsin American Family Children’s Hospital. “The survey response rate was only 30 percent. We have no good numbers at this point.

For parents seeking to restrict the growth of a child, the prospect of being able to provide care at home for many years is a strong motivating factor. Yet despite the fact that three out of four people with intellectual and developmental disabilities live with a family member, the assumption that smaller people actually get better care at home — or in any setting, for that matter — is not supported by empirical evidence; no studies have correlated body size with quality of life. There are only the arguments of parents in opposing camps.

The pediatric bioethicist Nikki Kerruish, a senior lecturer at the University of Otago in New Zealand, has analyzed the perspectives of parents who support the therapy and those who oppose it. In the journal Cambridge Quarterly of Healthcare Ethics, she explains that the very definition of “quality of life” is disputed between the groups. Parents who object to curbing growth prioritize their child’s pleasure and comfort but never at the cost of higher-order concerns like bodily integrity and self-determination. They equate “growing” with “thriving.”

No amount of cognitive impairment justifies nonessential medical treatment; growth attenuation is always inappropriate. Conversely, parents who back growth attenuation tend to believe that maximizing pleasurable experiences and minimizing unpleasant ones is the best way to serve a child with extreme disabilities. If this can be achieved by caring for that child as if he or she were a young infant, then that is entirely appropriate.

One common response to critics of the AGT is "don't talk until you've walked in my shoes". Since my daughter Chaya is precisely the type of child for whom this "treatment" is designed, I feel entitled to sound off. That's just one of the (very few) perks of extreme parenting. Another one is that whenever we have had to bring Chaya to Bituach Leumi for a medical re-assessment of her disabilities, I don't sweat. I'm always 100% confident that she will be awarded 100% entitlement.

The number of US doctors who have been approached by parents to administer the treatment is on the rise. A recent survey of the Pediatric Endocrine Society, most of whose members are in the U.S., showed that 32 of 284 respondents have prescribed growth-stunting hormones to at least one disabled child. But my dogged online search didn't turn up even one instance of its use in Israel. If I just didn't persevere enough and you know of such a case please let me know.

I will be very glad to hear your views about this approach to raising a child with severe disabilities.

Tuesday, October 11, 2016

Institutionalization 101

Letchworth Village in Rockland County, New York closed its doors in 1996
Click for background [Image Source]
Some believe that the last word has been said about institutionalization. That while its evils in other countries have been publicized. That Israel is an exception. That its institutions are another breed, are laudable and deserve to be nurtured and supported.

So let me make it perfectly clear: Institutionalization of children and adults with disabilities is unequivocally evil - even here in Israel. Even a la Aleh!

The warehousing of people with disabilities has been and still is being halted everywhere else in the developed world. That same transition must be achieved in Israel. Now. 

Institutionalization in and of itself is now recognized by experts as the worst solution to the challenge of caring for people with severe disabilities.

Here is what a Columbia University lecturer and parent of a child with disabilities wrote after the August 2016 massacre [background here] of people with disabilities in Sagamihara, Japan. 

By warehousing people with disabilities, institutions send the message that they need to be segregated and managed. It becomes easy for their differences to be seen as a shameful and frightening secret that happens to other, less worthy people.
In truth, disability is an aspect of ordinary experience that touches all people and all families at some point in the cycle of life. As disability studies scholar Rosemarie Garland Thomson notes: The fact is, most of us will move in and out of disability in our lifetimes, whether we do so through illness, an injury or merely the process of aging.”
By warehousing people with disabilities, institutions send the message that they need to be segregated and managed. It becomes easy for their differences to be seen as a shameful and frightening secret that happens to other, less worthy people....
James Trent, a professor of sociology and social work at Gordon College, in his 1994 book, “Inventing the Feeble Mind,” describes shifting attitudes toward and treatment of people with disabilities in America since the Colonial era. According to Trent, in the Colonial and early republican eras, “idiots” – as people with intellectual disabilities were known at the time – were recognized members of their local communities. But beginning in the 19th century, the rise of modernity put greater emphasis on normality. A good citizen was one who had the ability to be productive and self-reliant. A new class of professionals emerged whose careers were devoted to managing human health and behaviour.
By the mid-19th century, these changes had contributed to the identification of “feeblemindedness” as a social problem that needed to be identified and treated. Feeblemindedness was a broad category that included people with intellectual disabilities, but also others who were deemed unproductive or immoral, such as immigrants, people of colour and the poor. It became increasingly common to remove the feebleminded and other people with disabilities from their families and communities and place them in institutions. Early institutions in the United States were inspired by French educator Edward Seguin, known as the “apostle for the idiots”. He believed that people with intellectual disabilities were capable of learning and development.
Inspired by Seguin’s success, the first American institutions, led by men such as Hervey B. Wilbur, Samuel Gridley Howe and Henry M. Knight, were dedicated to education and uplift. They were intended as a temporary measure to build residents’ skills and moral character, releasing them as productive members of society.
Within a few decades, the mission of institutions began to shift from reform to permanent custody of the feebleminded. It was hard to find employment for newly reformed inmates, particularly during periods of economic scarcity.
In the early 20th century, the eugenics movement contributed to prejudice against the feebleminded by proposing that they posed a threat to the purity and strength of the nation’s bloodlines...
By the mid-20th century, the rise of a parents’ movement and a series of damning journalistic exposes of facilities like Willowbrook State School and Letchworth Village began to roll back the practice of institutionalisation." 
["Why has Japan’s massacre of disabled people gone unnoticed?", The Independent (UK), August 31, 2016

Note to the Aleh PR team: Beware. Brandishing the euphemism "village" (here for instance) does not cleanse a place of its institution-ness. In fact, the infamous Letchworth was positively buccolic:
"The grounds surrounding the buildings were very plentiful and created lots of leisure space for patients." [Wikipedia]
Campaign poster from REPLACE [Link]
It's important to note that institutionalization had its roots in good intentions and compassion akin to the sentiments of the many misguided supporters of Aleh.

And here are findings of Disability Rights Internationala little-known organization dedicated to investigating the conditions in institutions for children with disabilities, 
The team is small, but they’ve made some genuine advances over the years... An expose of abuse in one particular facility that DRI collaborated on with the New York Times Magazine, contributed to the historic 2006 UN treaty on people with disabilities, which called for disabled people to have the same human rights as the able bodied.“It’s something that we can change,” says Laurie Ahern, President of DRI: “This is really not a complicated problem; this is about donors putting money to families and not supporting orphanages.” ... DRI, Lumos and other organisations including the Replace Campaign all support the idea that we should change this culture of institutionalisation and work on keeping families together, supporting communities, and improving social networks. ...[Their] work has also led to the European Union introducing a policy where European money cannot be used for maintaining any kind of institution... There is also an economic argument, Ahern adds: “It’s so much less expensive for government to support families to [help] children with disabilities go to school, than it is to pay to keep them in an orphanage for a long time. ["Out of sight: the orphanages where disabled children are abandoned", The Guardian, September 26, 2016]
On Yom Kippur, the Day of Atonement, let's remember: There is no  better atonement for the sin of institutionalization than de-institutionalization.

Friday, September 30, 2016

A thousand shekels a day?!

This is a follow-on to my previous post: "New tentacles for Aleh"

My husband and I attended a meeting this week at the invitation of the social worker in the community department of a leading social action group. We met with several other individuals variously connected to people with disabilities either through family or work relationships. It was a group of insightful, concerned and compassionate people sharing the goal of getting a new law passed in the Knesset that will greatly benefit people with disabilities.

We brainstormed about the approach that should be taken to galvanize public opinion in support of the law. It would empower people with disabilities - or in the case of those profoundly impaired, their families - to decide which government assistance they will receive and where they will live. The authorities would only override those requests that are utterly unfeasible. Currently, the circumstances of their existence is determined by "the powers that be" without their/their families' input.

This social action group has enlisted the cooperation of some twenty other Israeli organizations in conducting an intensive Internet and media campaign in advance of the upcoming Knesset committee hearing where the draft law will be considered. They anticipate significant opposition - yes, even in the 21st century - to this patently reasonable and long-overdue law.

The social worker who convened the gathering has already conducted a similar meetings of people with disabilities and shared some of their ideas with us too. She noted that none of them felt like pathetic victims and they all urged incorporating humor into the campaign.

Needless to say, the law would enable my husband and me to receive government subsidies towards Chaya's therapies here in her home. Right now, having turned 21 and ended the schooling part of her life [see "For our children with special-needs, nothing is ever enough"], she receives no paramedical therapies other than those I myself do with her,

Clearly this campaign will be an uphill battle. The Israeli public is unaware that the status quo here is far from ideal. If they are not entirely indifferent to this, people seem to believe that Israel's citizens with disabilities are cared for in an exemplary manner. And why shouldn't they? Most of our leaders and mentors are outspoken proponents of our status quo, including, of course, our prime minister and our latest winner of the esteemed Israel Prize, Doron Almog [see "Cultivating the Negev on the backs of the most vulnerable Israelis"]. Both tout the largest chain of institutions here, Aleh, ad nauseum.

And on a Rosh Hashana note, here is what Aleh told its donors in its holiday mailer. Following its hotline phone number for donations, and a detailed daily schedule of the children who are confined to its institutions, it declares in huge letters:
1,000 shekels is the average daily cost of every one of the 700 children in Aleh
Oh, really? And that's cheaper than funding the care of such children at home? I could enlist an army of elite professionals to help me out here with a daily subsidy of that magnitude.

Tuesday, September 27, 2016

New tentacles for Aleh

July 2016 visitors to Aleh's
desert facility [Image Source]
Many of you believe institutionalization can be defeated without ever mentioning Aleh - flag bearer of Israeli institutionalization. Many of you explain that singling out Aleh, the largest chain of institutions in this country, will only weaken the movement. You emphasize that our goal must be to shut them all down. And that we must resist being side-tracked by attacks on specific ones.

And so, fortuitously for Aleh, it remains unhindered by that activism.

Aleh is expanding, flourishing and extending new tentacles throughout this country unimpeded by laws, judicial decisions or negative publicity. Moreover it is winning the praise and largesse of people from every walk of life in the Jewish community both in Israel and abroad. People who are, inexplicably, ignorant of the global movement to de-institutionalize all people with disabilities. And Aleh is gloating about all that. Just visit its website.

Which brings me to its latest project: a new town beside its desert institution, aka Aleh Negev. Now you may wonder, with good reason, why an enterprise dealing in children with disabilities would segue to the real estate domain. But it is easily understood when you just look at all the other realms it occupies in addition to its original, core raison d'etre: institutionalization.

Here is its latest media release reporting the September 13th laying of the cornerstone for Aleh Negev's" new residential neighborhood...
The new neighborhood will be adjacent to the village [that refers to the institution (FR)] and will enable staff, volunteers and students to be more available and more accessible to the village’s residents and patients, saving valuable time currently spent on long drives to work, and contributing to the unity and quality of life of the village’s staff..." [Aleh source
First, it's noteworthy that Aleh'a PR cronies themselves concede here that, in this institution, more than 200 individuals exist in isolation from the rest of society. They can only be reached by their caregivers, according to the Aleh site, after "long drives to work" leaving them not very "available or accessible" to their charges.

Of course, it goes without saying that depositing highly-dependent people in such a location also isolates them from their own families who may not have the time or resources to trek there often.

This real estate venture is just another of several initiatives that Aleh is embarking on. Another is the construction of "hospital wings" in each of its branches. The argument is that such wings - and huge sums of money are already being raised for them - will enable residents in need of hospitalization to be cared for in the very institution where they exist 24/7. But why? Ambulances can transport them just as easily as abled people.

Aren't people with disabilities in need of hospitalization entitled to the same standard of hospital care as the the rest of the population? Should they be treated in some two-bit, ersatz hospital "wing" just because it will help open the purses of compassionate, ignorant donors?

I haven't heard any other protests against these "hospital wings". Please let me know your views on this issue.

Israeli activists for people with disabilities: wake up and smell the coffee.

Friday, September 16, 2016

As the week of 9/11 ends

News report of last week's commemoration in Jerusalem
[Image Source]
I remember well the day of the horrific terror attacks on the United States fifteen years ago on September 11th.

Still raw from the murder of our daughter Malki one month earlier, I was certain, the world would now empathize with our victimization at the hands of Palestinian terrorists. Israeli pundits discussing the attacks on TV reached the same conclusion. Israel is no longer isolated, they proclaimed. It has gained  allies in its war against terrorism.

Hmm. Not exactly the way things panned out. We are still isolated. We have few allies. And we certainly aren't embraced by other victims of terrorism as a member of their "club". (My husband wrote about his experience with "the club" here - under the sub-heading "A European encounter".)

The brand we are plagued with - as opposed to the rest of the Western world - is deemed the justifiable sort of terrorism that goes by euphemisms such as freedom fighters, protesters, rebels and resistance activists.

Nevertheless, as in the past, the Israeli government has chosen to commemorate 9/11 very intimately - as if we had been victims that day along with the US. That in itself is commendable. Five Israelis were among the nearly 3,000 victims of the 9/11 attacks and most Israelis feel an affinity for the American nation. Moreover, the JNF monument, called The 9/11 Living Memorial, is the only monument outside of the United States that lists the names of all the victims.

What is odd - some would say deplorable - is that Israel's remembrance of 9/11 and respect for its victims has exceeded that of its own terror attacks and victims. In 2009, a memorial [see Wikipedia] listing all of 9/11's victims was erected by the JNF in Jerusalem.

A memorial with the names of the hundreds of victims murdered by terrorists here in Jerusalem was promised to us fourteen (!) years ago - and has never been built. Here is what the designated site looks like today:

Photographed at the Machane Allenby site in Jerusalem yesterday
I was shocked to re-read what I had written about this site thirteen years ago ["No memorial, not even a plaque", Jerusalem Post, July 30, 2003]. It seems the previous year, a group of bereaved parents had sent the Jerusalem municipality an attorney's letter which eventually resulted in a meeting and in an assurance that plans were already underway to erect a central memorial at the Machaneh Allenby site on Hebron Road, on Jerusalem's south side. They assured us that representatives of the families of terror victims would henceforth be active partners in all relevant decisions by the municipality.

I wrote this in 2003:
When I visited the Mahaneh Allenby site last week [nine months after that meeting] the litter had proliferated and the weeds had grown taller, but no other changes were evident... The site of this intended central memorial stands today pretty much the same way it has stood since it was originally landscaped and terraced about four years ago.... A manager in the City Engineer's office recently conceded to us that the project is headed nowhere because it lacks a ba'al habayit - an internal champion- who will promote it, raise the necessary funding and ensure it goes somewhere."
The trend toward marginalizing Israel's terror victims stems from the highest echelons of power here. Otherwise, the reluctance to remember our victims in public, in full view of pedestrians and tourists, would not be so extreme and persistent.

This week we heard our prime minister spew his predictable banalities at a 9/11 cabinet meeting:
“We remember the victims. We embrace their loved ones. We stand with our greatest ally, the United States of America, and with other partners in the battle against militant Islamic terrorism that spreads its fear, its dread, its murder around the world,” [Via the website of the Israeli Foreign Ministry]
Let's all bear in mind that Netanyahu has chosen to embrace their loved ones while ignoring those of his brethren. He has demonstrated nothing but disdain for the victims of terror residing in the state he rules -  treating our pleas, our letters, and our loved ones' right to justice in the context of the Shalit Deal with utter disregard. And he has certainly done nothing to promote the construction of a public monument naming all of Jerusalem's terror victims.

At the same time, he has pandered to Hamas terrorists, satisfied some of their most extreme demands - to wit, the Shalit Deal - and is dedicated to making life for Hamas prisoners as comfortable as possible within the  limits of incarceration. (I addressed this in a post last month: "Fifteen years on, there's no relief from the grief".)

Friday, September 9, 2016

Salute the superhumans

Itzhak Mamistvalov [Image Source]
I realize that, given the profundity of my daughter Chaya's disabilities, the Paralympics should be totally irrelevant to me.

But, somehow, I  am always thrilled by the feats of people with disabilities of any sort. Unfortunately, I've found that the dearth of local media attention accorded the event in the past isn't very different this year. A fact which shouldn't surprise us. It's in keeping with this society's general view of people with disabilities which I (tiresomely?) harp on here.

Nevertheless, it is noteworthy and disappointing.

Since I was awake in the wee morning hours anyway re-bandaging Chaya's horrific pressure sores, I watched the live coverage of the Paralympic's opening ceremony on Israel Television, feeling as though I must have been among a handful viewing it.

One of the Israeli commentators complained about the meager airport send-off the Israeli delegation of Paralympic athletes had received. Another focused on the financial straits that beset those athletes. It's an across-the-board picture of neglect and uninterest in our citizens with disabilities.

An impressive website profiling all the American Paralympians was also mentioned. Unfortunately, neither that site nor the official Paralympics site offering live video coverage seem to be accessible in Israel. (Why??)

The stories of indomitable bravery and tenacity that characterize Paralympic athletes around the world are compelling.

Tatyana McFadden leads the way at the London 2012 Paralympics
[Image Source]
Take, for instance Israeli Itzhak Mamistvalov who was born with cerebral palsy, and swims competitively using only his right hand. In 2004, he won two gold medals and one silver and set two Paralympic records. In 2012, he won a bronze medal.

Then there is the American, Tatyana McFadden, 27 who was
born with spina bifida and adopted from a Russian orphanage, [and] is paralyzed from the waist down. [Her sister] Hannah McFadden, 20, adopted from Albania, born without a femur in her left leg, is an above-the-knee amputee. She uses a prosthesis to walk and a wheelchair to race. [New York Times, September 1, 2016]
Both will compete in Rio, and Tatyana is likely to win gold several times over as she is the world-record holder in the 100, 400, 800, 1,500 and 5,000 meters.

Brazilian Olympics boss Carlos Nuzman praised the athletes at the gala opening ceremony thus: “You are superhumans.”

Not at all hyperbolic, I'm sure you'll all agree.

Wednesday, August 24, 2016

Fifteen years later, a mother's graveside words to a murdered daughter

My daughter Malki z"l and I,
April 2001
Today, the 20th day of Av according to the Hebrew calendar, is the anniversary of the day in 2001 when Hamas launched an assault on Jerusalem's Sbarro pizzeria. The text below is the English translation of my brief tribute given at the graveside today.

After a decade and a half of memorials, of suffering, of longing for Malki and Michal and of fury over the travesty of justice inflicted by our government - there is nothing new.

Just an intensification...

Now it is even harder to approach you, Malki, to remember you and your beauty both internal and external.

Sometimes when I recall images of you, I must immediately flee them; the pain is so unbearable.

Today would have been the 92nd birthday of your grandmother from Australia whom you always loved and honored. Sadly she passed away this past Shabbat.

Like you, she was persecuted and pursued by haters of Jews. Like you, she suffered at their hands. But unlike you, she survived and was blessed with a wonderful "bayit ne'eman b'Yisrael" - a Jewish family.

She was so impacted by your murder that, despite her frailty, she made the grueling trip to attend the memorial held here in your memory 30 days after you were murdered. That was her last visit to us. But, as Daddy just wrote me, he found that she subsequently filled her room with photos of you. They are still there.

As I have done each year, I opened your diary - the last gift you gave us, a window into your innermost thoughts. I was impressed anew by your maturity, your innocent faith, your modesty and your devotion to your job as a leader in the religious youth movement, Ezra.

All the admirable traits you demonstrated there - empathy, striving for perfect relations with all of your friends and the children you led and deep love for family - it is clear that had you lived as you should have, those same traits would have stood you in good stead in your career, your relationship with a husband and in raising a family of your own - challenges you never enjoyed.

על אלה אני בוכיה עיני עיני ירדה מים כי רחק ממני מנחם
איכה א טז
"This is why I weep and my eyes overflow with tears. No one is near to comfort me, no one to restore my spirit." [Lamentations 1:16]